Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

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Comments

  • feb11gal
    feb11gal Member Posts: 16 Member

    Hello everyone my name is CC.

    I was diagnosed in February of 21 with advanced degenerative endometrial cancer stage 3C.

    I have had 15 sessions of various kinds of chemo, 28 sessions of radiation, additional 5 sessions of brachy vaginal radiation, and 2 surgeries. Even though I have not reached remission yet I am still hopeful.

    Shortly, I will be going on a targeted therapy of an MEK inhibitor with the goal of blocking pathways to 2 of my mutated genes.

    I am fortunate enough to live in Seattle Washington and have a fantastic doctor.

    CC

  • feb11gal
    feb11gal Member Posts: 16 Member

    HiJen

    I feel for you as I Can still remember the 1st several weeks after I started doing research on my cancer diagnosis and felt like I was in a daydream /movie plot and/or haze all the time.

    Try to gather as much support from friends and family as you can. Even if it's been 15 years. You will need all the support you can get.

    I pray that you are in stage 1. Please keep us posted.

    CC

  • MarieAnne
    MarieAnne Member Posts: 3 Member

    Your story is ME right now and I am scared please tell me how things went for you thank you

  • Mercorby
    Mercorby Member Posts: 95 Member

    Update to my update.

    After nearly 6 years on Ibrance and anastrozole for twice recurrent endometrial cancer, I had a recurrence in September. It was treated with brachytherapy. Weird info though. Cancer is still adenocarcinoma, still er+ pr+ her2-, and associated mutations in PTEN and PIK3CA are still the same. No additional new mutations. The tumor was possibly not dense enough to get a great sample. For five months before this third recurrence, I had to take longer breaks from the Ibrance (but not the anastrozole) because my blood counts were terrible (white and red).

    So the onc agrees that it is possible that the extended time off could have allowed the cancer to recur. However, the density of the tumor is a bit weird. I think that when I did get to take Ibrance, it did its job and didn't let the tumor grow much. Onc is keeping me on the same regimen, but the Ibrance will be a lower dose, so my blood counts should not be as affected and I can stay on the regimen.

    I also think that maybe if the onc was more on top of the Ibrance/blood count situation, there would have been no need for the brachytherapy. It could have been a wait-and-see situation. During the five months of blood count trouble, I also had weird complete metabolic tests.

    Another significant issue was that the dr wasn't around (out of the country for family reasons and academic presentations) so I wasn't really being cared for by any other doctor. I asked about lowering the Ibrance dose and was told to wait for my dr. When my dr did return, he wasn't really present until I made an appointment to specifically demand that he lower the dose. When he looked at how long I had blood test problems, he agreed. At my next appointment, next week (after scans), I plan to request that he assign someone to be my doctor when he is out of town. He needs a PA or some other type of assistant - someone that really can interface and listen to patients when he is unavailable.

    Hard to know what to do. Not ready to change doctors, just need more of a team.

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member

    Good plan